should i pay $90,000 for stem cells?

[Emily L]

After reading everyone post's I've decided not to do it. Going to tell my pa and Banny tonight

However @SB_1108 I support your decision to continue and understand your reasons!

 

[Emily L]

If you have $90,000, I would suggest donating to charities doing real research like OMF.

Funny I was just thinking that same thing!

 

[Emily L]

Thank you @Jonathan Edwards your advice was the final push I needed to say NO to INFUSIO

 

[Alvin2]

Funny I was just thinking that same thing!

If i had gotten to this thread earlier i would have suggested this, much higher rate of return
Any time someone offers a treatment with no scientific backing, no published research and promises of amazing recoveries its a lie, they are hoping to get rich off your desperation. The more desperate you are, the more they like it. They usually resort to testimonials or outlandish "scientific" explanations that no one else will agree with because they are lies.
Remember, if anyone comes up with an amazing cure they would be rich and famous if it were real, and would be happy to publish scientific research because it would make them more famous and more rich because and this would prove its not a fraud.

Fake treatments will never do this because the don't want scrutiny, they want to avoid it AND take your money.

 

[adreno]

 

[Jonathan Edwards]

There doesn't seem to be any evidence I can provide to convince anyone that it COULD be a legitimate area of study. All I can say is there are numerous journal articles discussing the use of Autologous adipose-derived stromal vascular fraction in the management of various conditions and there are currently over 40 recruiting studies on SVF on clinical trials.gov ranging from use in MS, fibromyalgia, rheumatoid arthritis and IBD.

You need to remember that in the last fifteen years or so journals have been replaced by commercial outfits that will publish pretty much anything because the authors pay them to. (In the old days the subscribers paid and wanted decent stuff.) And people who work in science want their stuff published so they do research that is trendy because they think that will be easier to publish. I am afraid that at least 80% of what is in the journals is junk now.

It is much like art. Between 1865 and 1885 a small group of French artists painted some brilliant original work called 'Impressionism'. For the next hundred years rubbish artists went on painting 'impressionist' pictures because people thought impressionism must be good. Same for New York 1950s 'abstract painting'. The problem is that whereas spending money on art is just for fun sick people spend money on rubbish treatments because they are desperate.

 

[SB_1108]

You need to remember that in the last fifteen years or so journals have been replaced by commercial outfits that will publish pretty much anything because the authors pay them to. (In the old days the subscribers paid and wanted decent stuff.) And people who work in science want their stuff published so they do research that is trendy because they think that will be easier to publish. I am afraid that at least 80% of what is in the journals is junk now.

It is much like art. Between 1865 and 1885 a small group of French artists painted some brilliant original work called 'Impressionism'. For the next hundred years rubbish artists went on painting 'impressionist' pictures because people thought impressionism must be good. Same for New York 1950s 'abstract painting'. The problem is that whereas spending money on art is just for fun sick people spend money on rubbish treatments because they are desperate.

I understand the skepticism considering specific research which would indicate that SVF would be effective for ME does not exist . However at this point, some research (regardless of how "trendy" it may be) does exist showing promise for other conditions. Should we reject all of those studies and ignore future work because each trial doesn't meet our acceptability standards?

I know we as a patient community are critical of published work but at this point, there does not seem to be enough evidence to completely discredit SVF as a potential therapy. What if a clinical trial were to develop? Would the ME community discourage patients from participating? What if those results were favorable? My point is, when does a treatment become worth trying? Because I disagree that we all need to sit and wait for an FDA approved drug. I'll probably be long gone by then.

 

[Snow Leopard]

This is Philip Battiade the guy who runs it and has his name on it, does he make sense?

No.

 

[barbc56]

Dr. Cheney made money by referring patients to the out of country clinics. People were trying to get group discounts so it would be cheaper to get to the clinic(s). I can't remember where the clinic was or if there was more than one.

 

[BurnA]

I haven't read this but it looks like it might be relevant to this thread. Apologies if it is off topic.

https://www.statnews.com/2017/04/10...al&utm_source=twitter.com&utm_campaign=buffer

 

[Alvin2]

I haven't read this but it looks like it might be relevant to this thread. Apologies if it is off topic.

https://www.statnews.com/2017/04/10...al&utm_source=twitter.com&utm_campaign=buffer

It sounds like a good idea but research at this stage does not typically pan out. Not to say it never will, scientific progress is accomplished by trying 1000 ways of doing things and hopefully one pans out. Is this part of the 999 or not?
That said this one will likely fail in humans as a monolithic treatment, loss of dopamine neurons is believed to be caused by alpha synuclein clumps, if you replace the dead neurons the new ones will be killed in short order. An experimental drug (Nilotinib) is able to break up alpha synuclein fibrils, restoring a fair amount of the patient's mobility but a few months after discontinuation the symptoms return at full strength. That said a cure may involve two steps, inhibit accumulation of alpha synuclein and replace dead neurons for a complete recovery, or perhaps a neuron generating drug in combination is all thats needed, there have also been drugs found to cause dopamine neuron growth.

 

[keenly]

NO, give it to me instead

 

[perrier]

Dr. Cheney made money by referring patients to the out of country clinics. People were trying to get group discounts so it would be cheaper to get to the clinic(s). I can't remember where the clinic was or if there was more than one.

I spoke with Dr Cheney assistant, and she said many patients who did stem cell treatment ( I've forgotten which type it was) had improvement, but it did not last. Therefore, some redid it. But because it didn't solve the problem and was costly it was abandoned.

 

[barbc56]

I spoke with Dr Cheney assistant, and she said many patients who did stem cell treatment ( I've forgotten which type it was) had improvement, but it did not last. Therefore, some redid it. But because it didn't solve the problem and was costly it was abandoned.

This is true. However, in my opinion any physician who advocates as well as profits from a nonproven treatment in the first place is an unethical practioner and should lose any medical license to practice.

I think it's very telling that the assistant said it was too costly to continue. As far as I'm concerned this is another way of saying it was stopped once it wasn't profitable. It was never proven "to solve the problem ".

@perrier I am not criticizing you but what the assistant reported.

 

[Sushi]

However, in my opinion any physician who advocates as well as profits from a nonproven treatment in the first place is an unethical practioner and should lose any medical license to practice.

One of my friends went to Panama with Dr. Cheney for this treatment (infusion of stems cells taken from their own fat tissue). As far as I know, Dr. Cheney did not profit from this. All the fees went to the clinic in Panama.

My friend found improvement for a few months but then relapsed.

 

[barbc56]

This may very well be true, I simply don't know. However this has nothing to do with ancedotal reoprts but. the fact that a doctor recommended an unproven therapy to dodgy clinics. This says quite a lot and screams of unprofessionalism.

There might be a possibility he didn't profit but it also seems equally possible he did. Since we don't know, maybe this warrants investigation. I know that others doctors have but that may relate to clinics that now have unfortunately popped up in the stated.

Patients who were robbed of their money should file a class action suit. Even it's not specific to mecfs. Unfortunately, people may be hesitant to do this out of embarrassment or some other reason.

Just because Cheney has been involved thr in me/cfs community, it does not give him a free pass to advocate dubious practices that have not been proven and prey on patients vulnerabilities. I would say this about any doctor who's doing something like this.

Unfortunately, these doctors often believe in what they are doing, which makes things even more problematic.

I would hope that someone would look further into this. I have been saying this for years but action speaks louder than words. Maybe the time has come to do this?

 

[Biarritz13]

No, there is no plausible mechanism for this to help, even in autoimmune diseases, or MS etc.

Stem cells are not a treatment. Stem cells are given to counteract the harmful effects of a treatment, not as a treatment. What treatment is being suggested that needs stem cells to counteract? From what you say this is straightforward fraud. It is witch doctor level.

http://www.laprovence.com/article/economie/4182816/le-corps-comme-medicament.html

It does lead to an 50% improvement in sclerodermia (autoimmune disease), 2 months after the injection in 12 patients. The experiment was done in a public hospital.

 

[taniaaust1]

Thanks guys you are confirming what my brain is telling me. If he could really cure all these people then wouldn't his name be all over CNN?

Exactly, If he was having that much success at curing ME/CFS patients .. a 95% success as he's told u.... believe me we here would know about it

 

[taniaaust1]

There are a whole lot of red flags that make me doubt it is real, but then there are a lot of people saying they are improved.

Placebo responses, did u consider that. A fairly high amount of people get cures from anything at all due to this. To consider and know that anything is helping, u need to compare it with a placebo rate.

 

[SB_1108]

Placebo responses, did u consider that. A fairly high amount of people get cures from anything at all due to this. To consider and know that anything is helping, u need to compare it with a placebo rate.

I'd be happy with a placebo response if that meant that I felt some better.

It's worth noting that drug companies are the ones funding clinical trials. Without a medication to make a profit on, a double blind placebo controlled study on SVT is unlikely to happen. Especially since the stem cells are obtained through your own fat. Clinical trials are expensive and we would need someone to invest in this - big pharma isn't interested!